My Long And Confusing Endometriosis Journey

Heavy and painful periods could be a sign of Endometriosis. Share to Raise Awareness!

Ok so here’s my story (please bear with me this will be long, but it’s my story. Long, confusing and mine.

I’m 5 days post hysterectomy.

I am 29 years old, always had very painful, very heavy and long periods. It was awful, I felt like my pelvic bones were being gripped with 2 hands and pulled wide open, I couldn’t stand at times, or sit, or lay down, or anything comfortable. I had very sharp pains in my abdomen. I had issues with my bowels due to it. I dealt with a lot of cysts that caused pain and in a few cases hospitalization to be treated for pain and monitor size. I do have 3 kids, after each kid something got worse. I was on state pregnancy insurance and could see my OB Dr. J when prego, and for my yearly, and of course when I was in the hospital. He had mentioned on multiple occasions PCOS cause of the ring of cyst around my ovaries and Endo, but I couldn’t ever get more because I just couldn’t afford it. It just wasn’t something I could take care of. I had 3 kids to take care of, take care of myself? That was unheard of.

I had my last child in 2014 and things got worse, the pain got worse, I had terrible back pains, extreme bloating, the fatigue got worse the bleeding got worse (so very heavy, easily 14 day periods, 35-day cycles, cramping that shouldn’t be possible).

After my baby, I had an IUD put in, wasn’t thrilled about it but needed something I could rely on. I went with it and loved it for 2 years, my cycles remained terrible but I figured no change was ok too vs it being worse. Then all the sudden in October 2016 I had terrible pain, bowel movements getting more difficult, sex becoming more difficult, this sharp pain that wold come and go in my abdomen region (ive never been good at locating pain, like uh “inside somewhere!!!”) I ended up in the er they said they couldn’t see my ovaries, there was a cyst on my liver and my iud has moved out of place which caused some of my pain it was stuck in my cervix (that pain I could locate…ouch!).

So it led me to Dr. D, a gyno I could do on a sliding scale while I waited for state insurance to kick in. She LISTENED to me, to my concerns, my long list of pains, my history etc. She replaced the IUD but said she’d like to see me back in 4 weeks. So I went back, and she said it appeared my ovaries were behind my uterus and look stuck together, she was thinking endo. She showed me the ring of cyst on my ovaries (as much as we could see ). She suggested a lap to check it out. Well a year passed and in that year I bled for 6 months straight, had my IUD out, bled for 3 months and had to be put on low progesterone pill for birth control and when I got to the point where I was filling pads every hour for days she added the depo shot along with the pill to attempt to suppress my system so, I didn’t bleed to death.

Bleeding stopped. I still had lots of pain, Pms symptoms, terrible bloating, the whole 9. She recommended a hysterectomy as a possibility, not as a cure, but a means to at least one end. I denied but then at my last appt to finally schedule surgery I agreed, I just couldn’t take the pain and the periods. They were set to remove my tubes during surgery anyways, I am done having kids, so I figured my health needs to be a priority now. That this year, turning 30 soon, already not going to have more child that it was time to take care of me.

So, they go in and find no endo, but did find an enlarged, “boggy”, uterus hanging over my ovaries (that was keeping them there together), and they still did the hysterectomy. At first, I was upset because and maybe you’ll understand this when I woke up my husband told me “you’re fine, there was nothing but they still took everything ..which I don’t get cause nothing is wrong” at first it hit me like “Oh my god! I’m healthy and they broke me!” My mom’s crying, talking to my dad about a lawsuit, all the nonsense and as the meds worse off more into the day I remembered: “wait I wasn’t ok, this is real, something is..or was..really wrong!” It’s so hard when you can’t explain how the pain feels, or where the pain even is sometimes! Its hard when people who don’t have these kinds of cycles and issues look at you like you must be crazy.

So, Dr. D visits with me later, she explains.she didn’t find anything to remove but she does not rule that out that I don’t have endometriosis, she said it’s still possible without the adhesions, maybe it was before the adhesions, OR maybe all the hormones helped something (not cured just helped she got some of it) because it DID help my cyst…

She did say she really believes this is adenomyosis and won’t know until results from pathology come back. She thinks it’s both but waiting on results for a hopefully clearly defined diagnosis.

It’s a lot of possibilities with these illnesses. A lot of things that could or could not be. It’s not easy, it’s far from it. I’ll never really know if I made the right choice because I can’t see the alternative of the life I would have had. Would I be in more pain but have had more children? Would I just be in pain? What I do know is it was the choice for me, right or wrong, whether I regret it later, I needed a fresh start on MY life.. not the life of my reproductive organs.

So, I wait for results, again, and hope at the end of all the chaos I’m not actually just crazy.

Heavy and painful periods could be a sign of Endometriosis. Share to Raise Awareness!